Friday, January 25, 2013

Myasthenia gravis is at it again. She's picked a new target and is working her evil magic on my stapedius muscles. Don't feel bad if you don't know what the stapedius muscles do. I wouldn't have known my stapedius from my gluteus maximus if it wasn't for The University of Catastrophe. Students with chronic illness majors forcibly learn random trivia about the human body.

Right now I am taking a class called Your Stapedius and You: Do You Hear What I Hear?

This class sucks.

The stapedius is a millimeter long muscle. Compare that to an eyelash at about seven millimeters and you get an idea how tiny this thing is. How can anything so tiny matter enough to wreck my day? The job of the stapedius muscle is moving the stapes, the stirrup shaped bones deep inside our middle ears.

"It reflexively dampens the vibrations of the stapes by pulling on the neck of that bone. It prevents excess movement by the stapes, helping to control the amplitude of sound waves from the general external environment to the inner ear."

This is all fine and dandy assuming the stapedius muscle is doing its job. Mine are currently AWOL. Myasthenia gravis is busily snacking on my stapedius muscles nerve/muscle junctions and is giving me hyperacusis.

The entire world is too loud. The furnace sounds like a roar. The cat purring on my shoulder sounds like a jackhammer. The refrigerator is growling at me. The clock ticking sounds like someone slamming a car door over and over. I feel like someone crammed ear buds in my ears and then cranked up the volume. It hurts to hear. Not only does it hurt to hear, all the sounds are blurred together into a cacophonous noise. I can't make sense of what I hear. As a musician this sucks. I feel lost in a world of noise.

I tried to block it out but the foam expanding from my ear plugs was too loud. Taking them out was worse than having them in. I was a ball of misery today.

Thankfully, this is only temporary. I have Mestinon tablets which work well on small muscles. Mestinon is like spinach for Popeye. It's amazing how quickly that stuff works. (And how quickly it disappears.) The hyperacusis will go away soon. I've had it before and it didn't last long. Myasthenia gravis is never the same disability twice. In a few days she'll get bored with the stapedius muscles and move on to my gluteus maximus. Then she really will be a pain in my ass.

Monday, January 21, 2013

Continuing the #DSMA theme of "Getting to know you," here are my answers to the 48 questions from http://diabetessocmed.com/2013/48-things-about-me/

1. WERE YOU NAMED AFTER ANYONE?

Yes. I have two great-aunts both named Marie, one on each side of the family.

2. WHEN WAS THE LAST TIME YOU CRIED?

Four days ago when I realized suddenly changing to a high deductible health insurance plan meant I could no longer afford insulin. I lost my prescription drug benefit until the deductible was met and there was no way I could afford to meet it. Running out of insulin really scared me. (My parents helped me meet the deductible so I stopped crying. Thanks Dad and Louise. I love you so much.)

3. DO YOU LIKE YOUR HANDWRITING?

No. I got an unsatisfactory grade in handwriting as a child. The only failing grade I ever received.

4. WHAT IS YOUR FAVORITE LUNCH MEAT?

Smoked turkey breast rolled up with cream cheese. Mmmm.

5. DO YOU HAVE KIDS?

I have one daughter.

6. IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU?

I would be friends with me. I love to laugh and care about others.

7. DO YOU USE SARCASM A LOT?

No.

8. DO YOU STILL HAVE YOUR TONSILS?

Yes.

9. WOULD YOU BUNGEE JUMP?

Only if I could do it from one inch off the ground.

10. WHAT IS YOUR FAVORITE CEREAL?

Apple Jacks. Although last time I ate them my blood glucose was so high I felt like my brain was going to leak out of my ears. So I think I am going to have to pass.

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?

Is that what laces are for? I had no idea you were supposed to untie shoes until just now.

12. DO YOU THINK YOU ARE STRONG?

Let’s see… I survived a nine and a half hour surgery where my chest was split in half with an electric saw. When I woke up it felt like a gorilla wearing golf cleats was dancing on my chest. I have survived 23 cycles of back to back IV chemotherapy. If I wasn’t strong, I would be dead.

13. WHAT IS YOUR FAVORITE ICE CREAM?

Ben and Jerry’s Karamel Sutra with a side of insulin.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?

Their eyes.

15. RED OR PINK?

Pink.

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF?

How I handle stress. I freak out and stay freaked out for longer than I want to. I'd like to flick a switch and stop being so sensitive, but there is no switch.

17. WHO DO YOU MISS THE MOST?

My mom. She died January 31, 2007. I wish I could play cello and piano duets with her again. Her love of music passed to my hands.

18. WHAT IS THE TECHNIQUE THAT YOU NEED TO WORK ON THE MOST?

Getting the left joystick and the right joystick lined up so I can press the R2 button and break open the treasure chests in Assassin’s Creed 3. Also bowing the cello more smoothly when up high.

19. WHAT COLOR SHOES ARE YOU WEARING?

Soft purple slipper booties. It’s 2 degrees outside.

20. WHAT WAS THE LAST THING YOU ATE?

Roast chicken, homemade macaroni and cheese with a crunchy topping and spinach. Blood sugar is 118.

21. WHAT ARE YOU LISTENING TO RIGHT NOW?

Acoustic Eidolon Stonehaven

I told Hannah those notes weren't on my cello. She took Sir Barclay and proved me wrong while I laughed like a loon. Ha! LOVE YOU MUCH Hannah and Joe. Hugs!

Other than my own book draft, Star Wars: The Hand of Thrawn. (OK, yes, I am a dork. I admit it. Please don’t shove me in a locker.)

39. WHAT IS ON YOUR MOUSE PAD?

I don’t have a mouse pad.

40. FAVORITE SOUND?

My cello. Hannah's cello. My family laughing. My dog snoring. The soft sound of my pillow when I lie down. Ice shards in the lake when waves jingle them together. It sounds like wind chimes. Sandhill Cranes when they fly over head. That's more than one thing. I am a musician. I meet the world ears first.

41. FAVORITE GENRE OF MUSIC?

I like a variety of music.

42. WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?

Israel.

43. DO YOU HAVE A SPECIAL TALENT?

I have played the cello for over 30 years. Click the link on the right and take a listen if you would like. That’s me and Sir Barclay the cello singing together. I also write and love public speaking.

Sunday, January 13, 2013

I had one alarming morning. I was jolted awake by a loud beeping sound. I'd never heard that noise before. Beep! Beep! Beep! What is that? Where is it coming from? I opened one eye.

It sounded like it was coming from inside my bed. Why is my bed beeping? It took a second before I realized it wasn't my bed. It was XPU, my insulin pump. Beep! Beep!

I reached for my pump and she had a black screen. Beep! Beep! She sounded frantic. I felt frantic. I pushed buttons and the beeping didn't stop. The screen didn't light up. Beep! Beep! What's happening?

I must have looked like the guy in Edvard Munch's The Scream painting. All I could think about was not getting basal insulin and how fast that screws me over. How long has my pump been off? With my shrieking pump in one hand, I fumbled for the Dexcom on the bedside table. 143 and a flat line. OK. Whew!

I went from panic mode to troubleshooting mode. I got up and took the battery out of my pump. I put it back in. The screen was still blank. Beep! Beep! Beep! That's so loud! Make it stop! My pump was making way too much noise for so early in the morning. I figured XPU didn't like the old battery. Maybe she would like a new one? I put in a new battery. XPU stopped beeping and woke back up. My pump wasn't broken after all.

Whew! I must have slept through the first low battery alarm. I've never had a low battery warning while I was sleeping and I'd never seen a black screen before. It wasn't a whole lot of fun. Being jolted out of sleep, seeing a blank pump screen and then freaking out over my blood sugar was a lousy way to start a day. Even though it sucked, I am glad that beep was loud enough to wake me up. My day could have been a whole lot worse.

I don't like early morning troubleshooting. My new plan? Check the battery before going to bed. When in doubt, change it out.

Monday, January 7, 2013

Since I was little music has been an essential part of my life. When I was nine I fell in love with the cello. The sound of it, the way it feels to play, captivated me. The cello sings in the same range as the human voice. My cello has always been my voice and expression in the world. Disability threatens to silence my cello, but I will not let go without a fight.

Myasthenia gravis weakens the muscles in my entire body, including my hands. When MG invaded my hands I was terrified. I thought I was going to have to stop playing. Techniques I had practiced since I was a small child no longer worked. I couldn't hold up my shoulders or move my left hand on the neck the way I was taught. I kept trying, though.

I discovered I can play the cello with my shoulders close to my body. It would make my former teachers shake their heads in dismay, but it works for me. That solved the problem of fatigue in my shoulders. I still was clumsy on the cello neck. My hand would fall forward and collapse in the middle of playing. That wasn't as easy to fix.

One night I was practicing and I made a mistake. My thumb moved out of position on the back of the cello neck. My hand was stretched about a quarter of an inch out of place. The movement of my thumb caused my left hand to pitch backward. As soon as that happened all of the weakness in my hand disappeared. I was playing technically wrong for a person without MG, but for a person with MG... I was playing exactly right. The slight rotation in my hand helped me regain strength. The clumsiness vanished. A slight adaptation in technique was all I needed to get my left hand flying around my cello again.

I then proceeded to play the cello loud enough to peel the paint from the walls!

I was so excited to have found a way around my disability. But... my right hand kept dropping the bow. The proper bow hold requires a bent thumb. It's difficult to explain, so here's a picture from Cello Online.

See how the thumb is bent? I lost the strength in my thumb to maintain that bend. What I needed was something to help me hold my bow. I needed a way to grip it better. Believing that adaptability trumps disability I tried an assortment of things.

It looked ridiculous, but it worked somewhat. I found I could maintain a bow hold longer, but what I really needed was a bow grip that would hold my thumb in place. I needed something to brace my thumb so it would stay bent, but be loose enough so I could still move my hand. It needed to be firm enough to press against, but still soft and flexible. I tried a foam tube but it didn't work. I was stumped, but I kept thinking.

A few weeks ago I was in the pharmacy picking up more insulin. When I walked through the baby aisle. I saw...

Pacifiers are soft but still firm. I wondered what would happen if I cut two pacifiers and put them together on my bow like this...

My thumb goes between the two. The one in front maintains the bend in my thumb so my muscles don't have to work so hard. The one in the back provides a grip to keep me from dropping my bow. There! An adapted cello bow. I held my bow and it felt like an extension of my right hand. My cello sang out a melody and the sound became an extension of my own being. The melody flowed from my soul until it became my joy.

I have always loved the cello. I haven't stopped loving it. I refuse to stop playing. I am going to keep playing no matter what. The ability to think, the ability to strive, and the ability to fight back trump disability. Always.

Wednesday, January 2, 2013

Somewhere between a nap and passing a note to a friend, I learned about the order of operations in math class. PEMDAS, or Please Excuse My Dear Aunt Sally, are mnemonic devices to help us solve equations in the correct order. PEMDAS: parentheses, exponents, multiplication, division, addition, and subtraction. This information has come in handy thousands of times since I left high school.

Wait... PEMDAS has never come in handy. Know what would have been handy? A class in how to fold a fitted sheet. All of my fitted sheets are rolled in wrinkly balls in my closet, but thanks to math class I can solve this problem in my head: 12(-5+8)-5 = x Isn’t that useful?

I taught the order of operations to my daughter when she was in high school. She hasn’t used PEMDAS since her last math test. Neither of us know how to fold a fitted sheet, but no doubt the PEMDAS mind virus will be passed on to her future children. I am already certain my great-great-grandchildren will be rolling fitted sheets into balls while solving equations in their heads.

Still, the concept of needing to do certain tasks in order isn’t lost on me. Adding eggs to pancake batter after they are in the frying pan doesn’t work. The pancakes turn into sloppy dough balls that get super hard after cooking. Not that I have any personal experience with forgetting to add ingredients to pancakes and then trying to cover up my mistake by frantically stirring eggs and batter in a pan. I was frying dog treats that one time. Or at least that is what I told my family while I made more batter.

In cooking, getting the sequence right often means the difference between creating food or glop. The sequence also matters when checking my blood sugar. Diabetes management requires fiddling around with strips and lancing devices. Lancets are made of plastic. They have a ball on top that covers the needle. Loading a lancing device requires placing the lancet in the slot and then removing the ball. If you remove the ball first the lancet pokes ten thousand holes in your finger while you try to load it. Not that I have done this. No one is dopey enough to try and load a lancing device without the ball covering the needle. Well, no one except for me.

Loading the lancing device and sticking strips in the meter felt strange after I was diagnosed. I felt like I had oven mitts on my hands. I kept dropping things. I whined, “I can’t do this!” My husband reminded me I can string a cello. Cellos are far more complicated than my meter. Maybe, but I have been playing the cello since I was nine. Cello strings felt natural to me. Lancing devices and strips didn’t. I fumbled with them for months. It wasn't easy to get used to them.

I check frequently. I check before and after every meal, before I drive, before and after exercise, and before bed. Since I check so often you would think I never make mistakes anymore. That might be true for other people, but not me.

I still insert my strips backward, or try to feed them into the data port. Yes, I have even tried sticking test strips into my iPod. Those technical difficulties, while embarrassing, aren’t the worst mistakes I make. The worst ones are when I forget the blood glucose checking order of operations. The order of operations is as follows.

1. Wash your hands
2. Open your strip container
3. Take out a strip
4. Place your strip in the meter
5. Take a moment for the meter to boot
6. Lance your finger
7. Bleed on test strip
8. Grunt at the result.

I invented the mnemonic Wisdom On The Path To Lower Blood Glucose to help me remember what to do. I still get it wrong anyway. Step one I get right about half of the time. I have eaten a tangerine, forgotten about it, and tested with juice lingering on my fingers. Then I don’t just grunt at the result, I shout something that rhymes with goalie mitt.

Do I get the rest of the steps right? I wish. My usual routine is not nearly so wise. More often than not I will prick my finger before getting out a test strip. Second only to error messages, this is my biggest annoyance. Opening the lid while trying not to drop blood on my pants sucks. Sometimes I find the whole process annoying. However, the wisdom of checking frequently I never question. Even when I get a result that I don’t like, I am always patting myself on the back for the effort. Wisdom On The Path To Lower Blood Glucose reminds me that I am doing the right things to look after myself. And that matters.

Marie Smith

Marie Smith is a writer, cellist and talented public speaker. She is the author of Life Music: Lessons Learned At The University of Catastrophe. And her new book Life Etudes: Studies in Thriving At The University Of Catastrophe

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

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